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"My Last Sound": What is the last sound you wish to hear at the end of your life?

Help humanize patient experience, one soundscape at a time

Photo of Yoko K.
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Who is your idea designed for and how does it reimagine the end-of-life experience?

It is for everyone. Our team member/contributor, Julia Wardle, is a sign language interpreter, and her focus is the socio-political analysis the deaf community at Georgetown University CCT, and we are making sure everyone - including the community of the deaf and hard-of-hearing - is included in the dialogue.

Update (9/4/2016): Yoko was in Iceland for Saga Artist Residency, interviewed people with the question "what is the last sound you wish to hear at the end of your life?" and gathered responses, then created a site specific music piece that she performed on September 4th.


Update (9/7/2016): Yoko will be at Stanford Medicine X to continue interviewing people and gather responses, and create another site specific piece to be performed on September 19th.


Some people say hearing is the last sense to go when we die.  

What is the last sound you wish to hear at the end of your life?

http://www.sensound.space

Having a sound will implies planning, it implies a state of mind – how can I prepare now for my ideal end-of-life experience? Although death is not always anticipated, the idea of the sound will can be used in important situations to empower people at the end of their mortal journey. 

Currently, our team is working with Sibley Memorial Hospital to understand noise issues from a human perspective.  I am also doing fieldwork at hospice/palliative care centers to find how creating a thoughtful sound environment can affect our sense of dignity.  This matches perfectly with Bettina Felgel’s thoughts of "hospitals and healthcare as an ecosystem." 

My mentor, a community physician, told me that first we have to heal patients, then we heal healthcare staff, then we heal hospitals, then we heal the community, then we have to heal the healthcare system as a whole. As an expert patient (with really sensitive ears) I believe the heart of "patient experience" is in the interaction with staff - so improving the experience for staff is the fastest and surest way to improve patient experience. 

Right now hospitals have a noise issue. We are trying to reduce and to mute the noise. But studies have also shown that silence can feel surreal and it can detract from the serenity of our environment (Patrick Grahn). The sound will can help the healthcare community to customize the end of life experience, especially when patients reach the point at which they are no longer able to dictate their own environment. The wonderful documentary Alive Inside shows the power of music to help people affected by Alzheimers be able to remember themselves and experience more. BJ Miller says that today, “the most we can hope for in hospitals is numbness. Anesthetic. Literally the opposite of aesthetic.” 

What we want: Hospitals can prompt sick and dying patients to think of a sound will – it will empower patients. We can give agency to people who are at a stage in their life when they are no longer active, they are just being acted upon. It can also transform hospitals from a focus on disease control and prevention to a focus on personal spiritual and emotional needs. Maybe this will come in the form of pamphlets (hospitals currently have pamphlets for getting your affairs in order, etc.) that will mention a sound will option. Geriatric nurses could make it a practice to ask patients about their sound will. This idea is a behavioral fix that can humanize dying. 

We are starting a social media movement with @SenSoundSpace #soundwill on Twitter and through our website/blog Sound Will Project. We absolutely encourage everyone who reads this to post your thoughts there and to forward the idea - think of the places it could go!  The collection of response will inspire the interactive sound art performance at Stanford MedicineX in September 2016.  

· Ned Buskirk has an idea for Songs for the Dying. It is a wonderful way of acknowledging the value of art in our lives and memorializing life in ways that have been used throughout history – creating personal ballads for those at the end of life.

· Julia Wardle thought about creating a space where we can keep audio recordings of our family’s history. It would in essence become a genealogy library where you could go to create your own sound will or "my last soundtrack" - great idea from Sue Kempel - from those who have already passed on or from those still living, or you could pass on your sound will through the generations.  

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

- Site visit to Washington Home (one of the oldest hospices in the US), CEO gave positive feedback
- Design research with Sibley Memorial Hospital (Johns Hopkins Medicine) - having interviewed 40 patients to identify how sound impacts an individual's environment, experience and emotions
- Started the bulletin board to collect the response to the question www.sensound.space
- Collab with Stanford Medicine X to create a performing sound art piece based on the responses being collected

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

- I would like to have a dialogue with community members about the last sound they wish to hear at the end of life. I would also love if the community members can ask their friends and peers the same question.
- The purpose of this project, as of now, is to pose this question as a way to stimulate conversations around the end of life. Yet I would love the guidance as to how this idea could evolve into actual service design.

Tell us about your work experience:

I am an ambient electronic musician (http://www.yoko.mu); Kennedy Citizen Artist Fellow (https://vimeo.com/166897483); founder of Sen Sound (http://www.sensound.space); fellow at Halcyon Incubator (http://halcyonincubator.org/fellows/yoko-k-sen); made empathy robots at IDEO (https://vimeo.com/150137130)

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26 comments

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Photo of Victoria Perroni
Team

Dear Yoko,

What made you decide to tackle this specific problem? I have to say, I was not aware of this market before reading this article, but what you’re doing is impressive!

Two questions. How do you plan on sustaining this project past the years you spoke about above? Is this something that you plan on growing nationally and possibly internationally? Good luck on future endeavors.

Sincerely,
Victoria

Photo of Dawn Gross
Team

Yoko, this is truly inspiring work and much needed. I am sorry to have only just now learned of your performance at Stanford last month. I so would have loved to hear and meet you! Any chance you will be back in the bay area for the Re:imagine week at the end of this month? http://www.letsreimagine.org/#endoflife
I am looking forward to a time when the dissonant sounds of hospitals, which currently create aggravation, agitation and numbness, will be of transformed to "Sensound" and call us to want to approach those we are caring for with calm, tranquility and serenity. 

Photo of Yoko K.
Team

Hello Dawn!  Thank you for the message - indeed, I am planning to be at Re:imagine on October 24th and I will be presenting/performing.  I look forward to meeting you and learning more about you! 

Also here's the video from the talk (not performance) at MedicineX, if you are interested
https://www.facebook.com/stanfordmedx/videos/1204194359647980/?pnref=story

Photo of Kawita Thani
Team

I don't know if this fits into your research that you are conducting, but I wanted to share a personal experience which my sisters and I had just recently at the passing away from my father. My father was put on life support as a request from my sisters to the doctor as I had not arrived yet. It took me two days in travel to reach him. In the meantime, my sister kept talking to him saying to hold on as I was on my way. I arrived at the hospital at 4pm, and I got my share of time to talk to him and assure him I was well and happy. I had wished he would open his eyes, say something or show some movement. But we also knew that just happens very rarely. At the second session with him in the ICU, we prayed and meditated and told him to go. By 9 pm we got the call from the hospital, he has passed away in peace. I believe hearing is the last thing that goes, this is from my experience. He held on when they told him and he let go when we told him. 

Photo of Yoko K.
Team

Dear Kawita Thani the stories like yours are the reason I began this project and I personally had a similar experience with my own grandmother's passing. Thank you very much for sharing, and my thoughts are with you and your sister - may your father rest in peace. I too believe hearing is the last thing that goes. Sincerely yours, Yoko

Photo of Kawita Thani
Team

Thank you so much for replying and for your condolences too. Truly appreciate it and wish you lots of success for this project. 

Photo of OpenIDEO IDEO
Team

Congrats on being a Top Idea, Yoko! It's been absolutely inspiring to see how you've developed Sound Will to reimagine the end-of-life experience for ourselves and our loved ones. What an amazing journey it has been. In the coming weeks, we'll be making an official announcement to celebrate you and the other Top Ideas of the End of Life Challenge.

In the meantime, we would love for you to share your story in the upcoming End of Life Impact Phase. The Impact Phase is a space where the OpenIDEO community can share updates on how our projects are progressing beyond the challenge. For reference, here's a template for writing an Impact phase story:http://ideo.pn/1U9DrSN Well done Yoko!

Photo of Morgan Meinel
Team

Yoko K. , I am incredibly happy to see how Sound Will is evolving! 

Since first reading about this remarkable idea and your unique perspective as a patient, I have increasingly utilized music and sound to create a more peaceful, healing and loving environment for my patients on the Palliative Care Unit at Mount Sinai Hospital. I am very inspired and quick to ask them and their families what their favorite song or type of music is. I can not emphasize enough the magnitude this has had on their well being. Thank you. 

Many times I am part of the difficult and intimate process of liberating someone from a  ventilator (breathing machine), with the expectation that their time thereafter is very short. Our team is now in the habit of playing a meaningful song that we know will put that individual's mind at peace and ease, just moments before their death. I believe in a perfect world, each being would be able to listen to the song or sound of their choice, the one that brings them most joy and ease, as they transition into their dying state. Thank you, again, for raising awareness on how profound sound can be during this time. 

I look very forward to seeing how Sounds Will continues to evolve. Please let me know if I can be of any help with feedback/advice from a nursing and healthcare perspective. All the best to you! :) 

Photo of Yoko K.
Team

Dear Morgan, thank you for this message - and your thoughtful message back in June - and I am sorry it has taken so long to get back to you.  

Last month I had a terrible burnout and nearly given it all up. Then I emerged by deciding to fly along with this quote: "Pursue something so important that even if you fail, the world is better of with you having tried." (Tim O'Reilly)

Your message just made it all worthwhile.  

Thank you.
 
I would absolutely love to hear your feedback/advice from the nursing and healthcare perspective.  I would also love to share what we are discovering through our design research on identifying how sound impacts an individual's environment, experience, and emotions.  We are collaborating with Sibley Memorial Hospital's innovation hub (http://www.sibleyhub.com) to deepen our understanding on people's needs - especially where the needs of patients and healthcare staff intersect.  

As an expert patient I am a firm believer that the heart of patient experience is the compassionate interaction with the staff, more than anything else - so the solution we are currently ideating (to improve sound environment in hospitals) needs to be something that can provide safety and comfort not just for patients but also for the hardworking staff like you.  

Thank you for doing the work you do.

I'd love to set up some time to speak with you via Skype if you are interested.  My personal contact info is below.

Sincerely,

Yoko K. Sen
www.sensound.space
http://www.yoko.mu
yokokami@gmail.com
202-798-1240

Photo of Morgan Meinel
Team

Dear Yoko, thank you for your most thoughtful, kind, and inspiring response. I am fortunate to be on the receiving end of it. What a beautiful and inspiring quote to live by. I am very happy to hear that you are rising above the obstacles and challenges! Your idea has such tremendous potential to benefit many people. It certainly already has. 

I would love to set up a time to speak with you. I will private message you shortly. All the best to you during this refinement phase, Yoko! :)

Photo of Ned Buskirk
Team

This is great, Yoko K. ... I'd love to talk with you more about your work & how it might inform my @Music at the End of Life:
Songs for the Dying
 idea.

Photo of Yoko K.
Team

Ned, your idea is fantastic!  I think of my recent visit to Palliative Care Center and the concept of "death doula."  I believe there is an organization that trains harpists to play for the dying - but your idea for writing original songs for them is pretty original :-)  Our idea encompasses sound in general, as in sound environment/soundscape, which could include music, it could be voices of the loved ones, sound of nature, the tuning sound of an orchestra (someone actually responded this way).  The whole idea started out as me lying on the hospital bed imagining what's the last sound I get to hear at the end of my life - if it would be those beeps and buzzers (...NOT! :)  Best of everything with your project!!

Photo of Ned Buskirk
Team

Yoko K. Thank you & right back at you!

Photo of Shane Zhao
Team

Exciting to see the progress you're making with Sound Will Yoko! It'd be helpful to also include any additional assets you've been tinkering with. E.g feedback from your field research at Sibley Memorial Hospital, recent sound bites/ videos of this project, screenshots of the @SenSoundSpace #soundwill campaign? 

Photo of Yoko K.
Team

Thank you, Shane!  Yes we are in fact very deep into the synthesis / ideation process with the Sibley design research and I am happy to share our findings, plus our ongoing plan to "prototype" the idea first as an art project at Stanford MedicineX.  Sorry we have been so caught up and not had a chance to edit a lot of the stuff on the page - I suppose we only have 1 hour left to post the refinement?

Photo of Shane Zhao
Team

Hi Yoko, you'll actually still be able to update your idea until 8/7! But it's a good idea to do the updates in the next few — our panel of experts and judges will be chiming in to review all ideas and provide further feedback. Looking forward to seeing more of your synthesis/ prototypes!

Photo of Sue Kemple
Team

Yoko, this is profoundly beautiful. I was encouraged to check out your post because it relates to my project, My Last Soundtrack. http://www.mylastsoundtrack.com. Sounds, music - I love thinking about what the last thing is I'd want to hear on my deathbed, especially if hearing is the last sense to go. Perhaps we can connect and find some synergy in moving our projects forward. Thanks for all the amazing work you do!

Photo of Yoko K.
Team

Dear Sue, thank you so much for this message, and I am so sorry for the long delay getting back to you.  I posted the idea early in June, and we got so caught up with our work interviewing patients after patients that I have not had a chance to come back to this... until 16 hours left for the refinement!  Your project is so beautiful - I especially love the idea of it being "soundtrack."   As I mentioned in my response to Ned, our idea encompasses sound in general, as in sound environment/soundscape, which could include music, it could be voices of the loved ones, sound of nature, etc...  more with the intention of reducing unnecessary noise/suffering (often coming from incessant alarms).  Not just reducing something awful, but introducing something positive - and increasing options - like a soundtrack, with the agency for people to choose - is so important.  Best of everything with your project and I would love to connect, find ways to offer support.  Please keep me posted.

Photo of OpenIDEO
Team

Welcome to the refinement phase Yoko! Here are some key questions and milestones we encourage from all ideas in the Refinement:

1. How might this idea address the unique needs of the target audience you're designing for?
2. Clearly summarize the value offering of your idea in 1-2 sentences
3. Communicate your idea in a visual way with user experience maps http://ideo.pn/UX_Map
4. Identify assumptions that need to be answered in order to validate your value offering: http://bit.ly/1Oi8ZHu
5. Collect feedback from potential partners and users to answer the assumptions you’ve identified.

Lastly, here's a useful tip: When you update the content of your post, it'd be helpful to indicate this in your idea title by adding an extension. For example, you can add the extension " - Update: Experience Maps 07/12" to you idea title. This will be a good way to keep people informed about how your idea is progressing!

Photo of Bettina Fliegel
Team

Hi Yoko.
Thanks for sharing your beautiful work here!
    When I read the title of the post my first thought was wouldn't it be great if one could make their own personal "Koyaanasqatsi", combining their choice of sound and visuals while in the hospital, or at the end of their life?  I then watched the video you have linked, next to Kennedy Artist, and saw your beautiful work!  It seems you are looking at linking sound and visuals.  Cool!  Have you considered bringing this idea into hospital settings, in addition to the work you are doing manipulating sounds you captured from hospital settings?  I think this would be a great experience for patients and also for staff.  Working in a hospital environment can be very stressful and many doctors suffer from burn out.   As a physician I think of hospitals and also healthcare as an ecosystem, in which the patient should be the center.   Experiences that can bring one back to their humanity, or be protective of it,  can serve to support this system and those within it.   (my thoughts on this…)

Photo of Yoko K.
Team

Dear Bettina, thank you for the message!  Yes, I am currently finalizing the contract with Innovation Hub at Sibley Memorial Hospital (http://www.sibleyhub.com) (part of Johns Hopkins Medicine) to understand noise issues from human perspective.  I am also doing fieldwork at hospice/palliative care centers, and how creating a thoughtful sound environment can affect our sense of dignity.  "Hospitals and healthcare as an ecosystem" - absolutely!  My mentor, a community physician, told me that first we have to heal patients; then we heal healthcare staff; then we heal hospitals; we heal the community; then we have to heal the healthcare system as a whole.   You mention you are a physician - I'd love to hear more about your experience/perspective.  As an expert patient (with really sensitive ears) I believe the heart of "patient experience" is in the interaction with staff - so improving the experience for staff is the fastest and surest way to improve patient experience.  Thank you for the kind words and I look forward to discussing more - I will also be presenting the work at Stanford Medicine X this fall.  // Yoko 

Photo of Morgan Meinel
Team

Dear Yoko, your beautiful and creative work is a true blessing in the healthcare field! Thank you for your contribution to the ideas phase. I echo all of Bettina's sentiments. Your personal experience as a patient is incredibly valuable in helping us understand the essential needs of the people we care for as healthcare providers. Thank you. 

When we transfer patients and their loved ones to our Palliative Care Unit (often arriving from the ICU, emergency room, i.e. units with so much overstimulation and anxiety provoking stimuli), the first thing they usually communicate to our medical team is how quiet and peaceful the environment is - such a stark contrast from where they came from. 

Music, sound, and creating a peaceful environment on our Palliative Care Unit are a priority to us - knowing wholeheartedly that they have the potential to positively shape and mediate the dying process to one of comfort, serenity, and peace. Not just for our patients and their families, but for the staff as well. 

Through your work, you are truly embodying your mentor's advice and providing an avenue for the healing process of patients, healthcare staff, hospitals, community, and the healthcare system to evolve.

I look forward to hearing more about your project and hope that somehow we can incorporate your beautiful and beneficial work into every healthcare system worldwide. Thank you! :) 

Photo of Shane Zhao
Team

Love this conversation! Yoko, great to see you in this challenge:) We're looking forward to learning more about this idea. Perhaps you can share some more details in the Full Description section of your idea post? 

Photo of Aaron Wong
Team

Beautiful work, Yoko! To echo Morgan, I'm so glad you're bringing your talents to hospitals. 
I would really love to see your project also beautify everyday sounds - traffic signals, elevators, even horns! The power of music is so strong and can be so healing, I want to see it applied everywhere!

Photo of Bettina Fliegel
Team

Hi Koko.  Sorry about the late reply.  I am happy to share my experiences/perspective.  Are there specific questions you have?  Let me know. 

Photo of Julia Wardle
Team

If hospitals had a platform for recording stories and conversations with the patient's loved ones, it would create a unique and cherished soundscape for the end of the person's life. It could even be saved and kept by remaining family members! Music and the voices of my family - that is my sound will.